Connor Judge - Life & NMO
Hi- my name is Connor. I'm from Cleveland, Ohio. I'm a big sports fan, specifically Browns and Cavs. I have a 5 year old Doberman Pinscher named Leonardo who's my best buddy. Back when I was 22, I was diagnosed with NMO after randomly losing vision and going paralyzed from the waist down. NMO (Neuromyelitis Optica) or Devic’s disease is a neurological autoimmune disease that can cause paralysis, blindness, and many other ailments. I was blessed enough to be able to walk and see again after many months of being in the hospital, rehabilitation, and pushing myself physically at home.
Today I may be able to walk, but the disease still affects me in many ways. I don't have all the feeling in my legs, or anywhere near the energy I used to. This is a big deal to me because I used to LOVE to play basketball (was pretty damn good, can't lie) and any other sport. It affects me in a lot of other personal ways I don’t feel like sharing, but if you have NMO and reach out to me, I will gladly tell you everything you’d like to know.
The process of diagnosing NMO Spectrum Disorder (NMOSD) can be complicated sometimes. Some people actually can be misdiagnosed with MS, which treatment for may not actually help treat NMO. Before I was diagnosed, I had symptoms for about 3 months and went to the doctor's 3 times. It all started with eye pain, blurred vision and slight tingling in my legs. The first time I went to the doctor's, I was treated with a low dose steroid for inflammation. This did help, but when I was out of the steroids my symptoms came back. I went to the doctor a second time, even asked if my eye and leg issues were somehow connected. The doctor said no… Really bro? I'm not a doc, and I thought they were connected…The third time I saw a different doctor. She was actually worried it may be glaucoma, and had me schedule an appointment with an eye doctor and get an MRI. But at this point it was too late, because I couldn’t get into the eye doctor or get an MRI soon enough. The next few weeks were the worst of my life. The next symptom was leg pain. My job was landscaping doing hard physical labor, and driving a truck with a trailer. My leg pain made this absolutely miserable, and blurred vision made driving quite hard. About 2 weeks of this and I could not handle the pain anymore. I called off work for a week- this was the worst week of my life. For 4 days I had the most excruciating, burning pain in my legs. I took baths to try to relieve the pain. I was unable to sleep or eat during these days the pain was so bad. One morning I woke up, tried to get out of bed, and could not move my legs. I was terrified…. After crying a bunch and making calls to my mom and doctor I knew I had to go to the ER. I literally crawled out of my house and into my car, and my girlfriend at the time drove me. At the ER I was finally treated for my pain and given a spinal tap to find out what was going on. My mom was by my side the whole time, but when she saw the needle for the spinal tap she got sick. Luckily, an amazing neurologist was able to tell me that I either had NMO, acute demyelinating encephalomyelitis (ADEM) or transverse myelitis (TM).
He thought it was most likely NMO, but needed results of lab tests and MRIs to make sure. I was then admitted to the hospital (shout out to Cleveland Clinic), and was officially diagnosed with NMO. I am very blessed to be diagnosed with NMO in the ER. For a lot of people with NMO it can be a while before they’re actually diagnosed and to receive the correct treatment. I’m kind of angry at the doctors I saw before I was paralyzed for not sending me for tests or telling me to go to the ER. I feel primary care doctors need to be more thorough and proactive and listen to patients so ANY disease does not get worse. Like I said, I feel blessed, but I still have a chip on my shoulder for a lot of reasons…
It can be hard to deal and cope with having a chronic illness. I try to use humor, and laugh at some of my issues caused by NMO. To me it's better to laugh at than cry about it. I also try to do things I loved to do before, like playing basketball or going on hikes. A symptom a lot of us with NMO have is fatigue, which can make it hard to do anything at all. I was prescribed provigil for my fatigue and would highly recommend talking to your doctor about it.
There are treatments for active NMO relapses, and ones to prevent relapses. Physical rehabilitation can also help recovery from a relapse.
For my first relapse with blindness and paralysis, I was treated with high dose intravenous (IV) steroids. Then I was treated with plasmapheresis, aka PLEX, which takes out the plasma in your body, removes the inflammatory components, and gives your body back plasma. The PLEX helped and I was able to slightly wiggle my toes, giving me hope.
I was then at a rehabilitation facility for 6 weeks, which felt like forever. The doctor there told me I'd probably never walk again. That was the first time I broke down & cried like crazy, hugging and crying on my mom’s shoulder, asking "why me?" I eventually brushed off what the doctor said & put in my head that I’d walk again no matter what. I called myself "the confident cripple.” I worked my ass off in rehab, did everything I had to & more. At the rehab facility, I had another optic neuritis attack. This attack was terrible- going almost completely blind. After a dose of IV steroids, my vision came back almost instantly. I went back to the rehab facility and knew I’d have to work my ass off if I wanted to walk. I was able to walk with a walker in a few weeks & was released. Slowly gaining more strength & feeling in my legs I’d do laps around the house with my walker. After a couple months of pushing myself at home and going to rehab multiple times a week, I ditched the walker & traded it for a cane. A few weeks w/the cane, I felt confident I didn't need it & stopped using it against doctors’ advice.
I had an appointment w/an amazing neurologist at the Cleveland Clinic Mellen Center, and we discussed my treatment options. As luck would have it, a clinical trial for NMO was about to start. The drug removes B cells from your body. All I know is that B cells are thought to play a big role in NMO, so removing them should help. I stayed on low dose steroids until the trial started. I was the 1st person with NMO to be in it. This was a double-blind trial, so I didn’t know if I was on the drug until I had an optic neuritis attack after a few months. It’s been 4 years, and I’ve only had 1 relapse, just a few weeks ago.